What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

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GINA

The Genetic Information Nondiscrimination Act (GINA)

GINA Overview

The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers. GINA offers significant protections against discrimination but those who are at risk should carefully consider the use of genetic services. HDSA strongly recommends that individuals considering genetic testing speak with a trained genetic counselor both before and after testing. Taking a genetic test for HD is a very personal decision with outcomes that should be given much thought before the test.

PLEASE NOTE: The information provided is for educational purposes only and does not constitute legal advice. The examples included were extracted from laws, regulations and examples used by the Department of Health and Human Services (HHS) and the Department of Labor (DoL) and should not be relied upon as legal advice. Users of this information are urged to seek legal counsel who can apply the current law to the unique facts of each case.

Understanding GINA

What is GINA and when does it take effect?

The Genetic Information Non Discrimination Act (GINA) is a law that protects individuals against discrimination based on their genetic information when it comes to health insurance and employment. GINA includes two sections, or “Titles”. Title I prohibits health insurance companies and group health plans from denying coverage or charging a higher premium based on genetic information. Title II prohibits employers from using an employee’s genetic information to discriminate when making employment decisions about hiring, firing, promotion, or terms of employment.

What is considered genetic information under GINA?

Any information about an individual’s genetic tests or the genetic tests of family members, and the manifestation of a disease or disorder in family members of an individual.

Any request for, or receipt of, genetic services or participation in clinical research that includes genetic services (genetic tests, counseling, or education).

What is a Genetic Service?

Genetic Services is defined in GINA as genetic tests, genetic counseling, and genetic education. Under the law, employers and health insurers are prohibited from making employment decisions or coverage determinations based on knowledge that an individual has received genetic services.

Who is protected under GINA?

An individual who is discriminated against based on their genetic information when it comes to health insurance and employment.

Any person who is a dependent of the individual as the result of marriage, birth, adoption, or placement for adoption.

Any first, second, third or fourth degree relative of the individual, or a dependent of the individual (such as parents, siblings, children, aunts/uncles, nieces/nephews, grandparents, great-great grandparents, first cousins once-removed, and more)

The fetus of the individual or family member who is a pregnant woman.

The embryo legally held by the individual or family member utilizing assisted reproduction.

Application of HIPAA

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is federal legislation that introduced privacy standards in health care. The passage of GINA means that genetic information is now treated as health information under HIPAA, thus making genetic information subject to HIPAA’s privacy regulations.

What is a genetic service?

Genetic Services is defined in GINA as genetic tests, genetic counseling, and genetic education. Under the law, employers and health insurers are prohibited from making employment decisions or coverage determinations based on knowledge that an individual has received genetic services.

Who is protected under GINA?

An individual who is discriminated against based on their genetic information when it comes to health insurance and employment.

Any person who is a dependent of the individual as the result of marriage, birth, adoption, or placement for adoption.

Any first, second, third or fourth degree relative of the individual, or a dependent of the individual (such as parents, siblings, children, aunts/uncles, nieces/nephews, grandparents, great-great grandparents, first cousins once-removed, and more)

The fetus of the individual or family member who is a pregnant woman.

The embryo legally held by the individual or family member utilizing assisted reproduction.

Is genetic information now considered health information subject to HIPAA regulations?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is federal legislation that introduced privacy standards in health care. The passage of GINA means that genetic information is now treated as health information under HIPAA, thus making genetic information subject to HIPAA’s privacy regulations.

GINA and your health insurance

How has GINA affected what insurance companies can request or determine

Using genetic test results or family medical history to determine enrollment eligibility, premium level, or to deny an individual health insurance.

Requesting or requiring an individual to undergo a genetic test.

Requesting, requiring, or purchasing genetic information before or after enrollment.

Considering family history or genetic test results as a pre-existing condition.

A health plan may obtain the results of a genetic test for purposes of determining payment or reimbursement only, and can only request the minimum amount of information necessary to approve payment. There are a few exceptions, however, which are discussed below.

GINA generally prohibits plans and issuers from requesting or requiring individuals or their family members to undergo genetic testing. However, there are several exceptions:

Health Care Professionals – A physician or other health care professional who is providing a health care service may request, but not require, an individual to undergo a genetic test.

Determining Payments and Medical Appropriateness – Sometimes, the appropriateness of a medical treatment depends on an individual’s genetic makeup. In these cases, the health insurance issuer is permitted to request that the individual undergo a genetic test and may refuse payment if the individual declines to take the test. The plan or issuer may even base payment on the outcome of the genetic test. However, issuers can only request the minimum amount of information needed to determine the payment based on medical appropriateness.

Example:Sam’s father is diagnosed with Huntington’s Disease. Following the results, Sam undergoes the same genetic test. Sam’s insurance covers the genetic test for individuals who have family members with this condition. After Sam undergoes the genetic test he submits his claim to his health insurance for reimbursement. Before the insurance company pays the claim they request the results of the genetic test. Thus, under this example, Sam’s insurance provider may have violated GINA because his insurance covers the genetic test for individuals who have family members with Huntington’s Disease, thus it is not necessary for his insurance to learn the results of Sam’s test.

Research Purposes – GINA provides a “research exception” to allow health insurers or group health plans to request, but not require, an individual to participate in genetic testing for research purposes. Any such request must be made in writing and state clearly that compliance is voluntary and that non-compliance will have no effect on enrollment status, premiums or contribution amounts. Also, none of the genetic information collected as a result of the research may be used for underwriting purposes, and the individual has the option to drop out of the study at any time without consequence.

Example:Terri is 28 and is gene positive for HD. Terri’s health insurer is conducting genetic research on gene positive women in their 20’s, and asks Terri to participate. Terri voluntarily agrees and signs a form documenting that the study is voluntary and her participation will not impact her enrollment status, premiums or contribution amounts. Half-way through the study, Terri decides that she no longer wishes to continue with the study. She drops out of the study without consequences from her health insurance company.

Will my genetic information be protected if I decide to participate in a clinical trial?

A health insurance company is prohibited from requiring an individual to provide genetic information other than for payment purposes. However, an insurer may request, but not require, a genetic test as part of an individual’s participation in federally approved and regulated research. Any such request must be made in writing and state clearly that compliance is voluntary and that non-compliance will have no effect on enrollment status, premiums or contribution amounts.

Group health plans or health insurance issuers may use or disclose health information that is de-identified without restriction. De-identified information does not reveal any identifying information about a particular individual.

Personally identifiable genetic information is considered Protected Health Information (PHI), and may only be used and disclosed for research with an individual’s written permission. In limited circumstances, PHI may be used and disclosed without and individual’s written permission, but only:

under a waiver of the Authorization requirement, as a limited data set with a data use agreement, in preparation for research, or for research on decedents’ information. For more information about how an individual’s health information is protected in research situations, click here.

May my doctor require that I get a genetic test?

No. As part of providing health care services, a health care professional (such as a doctor) may request, not require, an individual to undergo a genetic test. This applies to health care professionals who are employed by a Health Maintenance Organization (HMO) as long as the healthcare professional is actually providing health care services.

What does it mean when a disease has manifested and how does that affect my premiums?

A disease, disorder, or pathological condition is “manifest” when an individual is experiencing signs or symptoms of the condition. Under GINA, an individual’s genetic test result is protected; however, health plans are permitted to use information about an individual’s disease when the disease has manifested.

Example – Bob has a family member that has been diagnosed with Huntington’s Disease (HD). When Bob is 30 he has a genetic test that indicates that he is gene positive. At age 42, Bob is examined by a neurologist and the results supports a clinical diagnosis of HD. Bob’s symptoms of HD are visible, thus the disease has manifested. Bob’s genetic test result is protected by GINA. However, after the disease has manifested, Bob’s health plan is allowed to use information about his disease to determine insurance eligibility* and rates.

*Note: The Patient Protection and Affordable Care Act, the health reform law that was signed in 2010 by President Obama, prevents health insurers or group health plans from denying coverage to an individual, even when that individual has a pre-existing condition. This provision will go into effect in 2014 for adults aged 19 and above; it has already gone into effect for children under the age of 19. Prior to 2014, individuals with pre-existing conditions, who have not had health coverage for 6-months, may apply for the high-risk pools. For more information click here.

What can change when a gene positive individual becomes symptomatic?

If you are insured under a group health plan then the insurance company cannot change terms due to manifestation of the disease. However, if you are insured under an individual health plan (meaning you pay your entire contribution and no other source, such as an employer, pays a part of the insurance cost) then an insurance company may still make changes to the terms.

What is incidental collection and how can health plans and issuers use it?

Health plans may unintentionally acquire an individual’s genetic information when they are collecting health-related information. As long as the acquired genetic information is not used for underwriting purposes, the acquisition would not violate GINA. However, it maybe considered a violation of GINA if the collection method is thought to anticipate acquiring genetic information, unless it is stated clearly in the collection method that genetic information should not be provided.

Example A – group health plan waives its annual deductible for enrollees who voluntarily complete a Health Related Assessment (HRA). The HRA does not include any direct questions about the individual’s genetic information. However, the last question reads, “Is there anything else relevant to your health that you would like us to know or discuss with you?”

Because this question may prompt a person to disclose genetic information, and because it does not explicitly state that genetic information should not be provided, genetic information collected in response to the question would most likely be prohibited under GINA.

According to the Department of Labor final regulations, for an employer to remain in compliance with GINA, a statement similar to the following should be included: “In answering this question, you should not include any genetic information. Please do not include any family medical history or any information related to genetic testing, genetic services, genetic counseling, or genetic diseases for which you believe you may be at risk.’’

Do the same protections apply to other kinds of insurance under GINA?

GINA only provides for protection under health insurance and Medicare. Issuers of other types of insurance, such as long term care insurance, disability insurance, and life insurance may still request genetic information to determine eligibility and other coverage terms.

What are the parameters of GINA and Health Risk Assessments?

GINA allows group health plans and health insurance issuers in most circumstances to collect genetic information through Health Risk Assessments (HRAs) as long as:

No rewards are provided for completing the HRA if it collects genetic information (a reward or incentive may be given if the HRA does not ask for genetic information).

The request to complete the HRA is not made prior to or in connection with enrollment.

The decision to complete an HRA is voluntary and cannot impact an individual’s policy terms or premiums.

When can coverage be denied?

A group health plan or health insurance issuer may be able to deny health insurance coverage to an individual that has a manifested medical condition, as long as every individual with that condition is denied uniformly. A plan or issuer is not able, however, to deny enrollment based on genetic information (i.e. a disease is not manifest).

Note: The Patient Protection and Affordable Care Act, the health reform law that was signed in 2010 by President Obama, prevents health insurers or group health plans from denying coverage to an individual, even when that individual has a pre-existing condition. This provision will go into effect in 2014 for adults aged 19 and above; it has already gone into effect for children under the age of 19.

I believe my health insurance has discriminated against me. What can I do?

If you believe your rights have been violated, you may file a written complaint with the Health and Human Services Office of Civil Rights (OCR) within 180 days from the date of the alleged violation. The OCR will investigate your charge and a determination will be made as to whether discrimination occurred based on genetic information.

For more information on filing a complaint with the Health and Human Service OCR, click here. Note that under the Health Insurance Portability and Accountability Act (HIPAA), your insurance company or health plan cannot retaliate against you for filing a complaint. You should notify OCR immediately in the event of any retaliatory action.

GINA in your workplace

How has GINA impacted the workplace?

GINA prohibits employers from using an individual’s genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms of employment and to limit, segregate, classify, or otherwise mistreat an employee.

Who must comply with GINA in the workplace?

Private employers with 15 or more employees

Employment agencies

Labor unions

Joint labor-management training programs.

When is it against the law for my employer to use family medical health history or genetic

According to the Department of Labor’s final GINA regulations, employers are prohibited from using an employee’s genetic information, genetic test results and family medical history when making decisions about hiring, firing, promotions or terms of employment.

What if my employer learns about my genetic information inadvertently?

An employer may not be considered in violation of the law if he or she learns about an employee’s genetic information inadvertently; that said, an employer cannot use this information when making decisions about hiring, firing, promotions or terms of employment. However, should an employer learn about an employee’s genetic status inadvertently, they may not be in violation of GINA. Several examples are noted below.

Casual Conversation and Unsolicited Information – A manager learns genetic information about his or her employee directly from the employee following a general health inquiry or by receiving unsolicited information. Such as:

Asks a general health question such as, ‘‘How are you?’’, or “How is your son feeling today?” Receives an unsolicited email about the health of an employee’s family member from a coworker, or overhears conversations between coworkers. However, questions from an employer which are probing in nature and are designed to determine the genetic information of an employee may constitute a violation of the law.

Social Media – An employer may learn about an employee’s genetic information through a social media platform which he or she was given permission to access by the creator. For example, an individual notes that he or she has Huntington’s Disease on their Facebook page and “friends” their employer.

Commercially and Publicly Available Information – GINA identifies newspapers, magazines, periodicals, Internet, television, movies and books as potential sources of public information. For example, an employer would not violate GINA if he or she learned that an employee has the gene that causes Huntington’s Disease by reading a newspaper article profiling several women living with the knowledge that they have the gene.

Can an employer lawfully request my health-related information?

An employer may be able to request an employee’s medical information (not to be confused with genetic information) in order to accommodate a disability or to comply with the Family Medical Leave Act (FMLA) or the American Disabilities Act (ADA). For more information about the ADA click here.

Requesting Health-Related Information to Comply with the Family Medical Leave Act (FMLA) and the American Disabilities Act (ADA) – An employer may request an employee’s health-related information to accommodate FMLA or ADA, but the employee is not required to provide his or her genetic information in these situations. According to the Department of Labor, for an employer to be in compliance of GINA they would need to provide the following warning to employees either in writing or verbally:

“The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the individual, except as specifically allowed by this law. To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. “Genetic information,” as defined by GINA, includes an individual’s family medical history, the results of an individual’s or family member’s genetic tests, the fact that an individual or an individual’s family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual’s family member or an embryo lawfully held by an individual or family member receiving assistive reproductive services.”

Can an employer lawfully request my genetic information?

In an effort to curb rapidly rising health costs, some employers have implemented incentive systems to encourage healthy behavior, called wellness programs. These programs often collect health information from employees. According to the Department of Labor, employers may only acquire genetic information only if they meet the following three terms.

The employee must provide prior, knowing, voluntary, and written authorization.

Only the employee and their health care provider receive individually-identifiable genetic information.

Genetic information that is collected can be disclosed only to the employer in aggregate terms; that is, the employer must not be able to match genetic information to a specific individual.

Furthermore, employers may offer incentives to employees for participating in a wellness program; however, they are prohibited from offering incentives to provide genetic information.

Example – An employer offers $150 to employees who complete a health risk assessment with 100 questions, the last 20 of them concerning family medical history and other genetic information. The instructions for completing the health risk assessment make clear that the incentive will be provided to all employees who respond to the first 80 questions, whether or not the remaining 20 questions concerning family medical history and other genetic information are answered. Since the employer is offering a financial incentive for only answering questions about family medical history and not genetic information, this would be an instance in which an employer is likely to have complied with GINA.

I believe my health insurance has discriminated against me. What can I do?

If you believe your rights have been violated, you may file a written complaint with the Health and Human Services Office of Civil Rights (OCR) within 180 days from the date of the alleged violation. The OCR will investigate your charge and a determination will be made as to whether discrimination occurred based on genetic information.

For more information on filing a complaint with the Health and Human Service OCR, click here. Note that under the Health Insurance Portability and Accountability Act (HIPAA), your insurance company or health plan cannot retaliate against you for filing a complaint. You should notify OCR immediately in the event of any retaliatory action.